Early Onset Menopause and Me at 23

On the 23rd March 2020, I found out that I have early onset menopause.

Trust Your Body

I knew it was coming. Six months of missed periods, hot flushes at least three times a day, waking up to night sweats at ungodly hours, I just didn’t want to believe it.

I’d always thought of myself as a bit of a ‘granny girl’ but this really isn’t what I meant.

It’s harder to hear it than it is to imagine it. When it’s in your head, it’s still your imagination.

The words haven’t been strung together in a sentence, so the reality hasn’t hit you yet.

I was sat in my kitchen in the midst of isolation in amongst the Coronavirus, working from home when I got the call.

I wasn’t expecting it as I was due to go to an appointment at the specialist clinic at twenty past four.

A male voice spoke to me, asking whether he was speaking to the right person, and proceeded to ask whether I was free to have a phone consultation rather than going to the clinic later.

I was relieved, as going to a clinic to talk to someone was the last thing I wanted to do.

I could hear him scrolling through notes and clicking for my results from countless blood tests, the lump in my throat rising as the silence continued.

“So Eleanor, from what I can see from your scan that you had, you have small ovaries. Now, you’ve told me about your symptoms, and with an FSH level at 150, I mean, well for a woman who is post menopause it’s usually around 130. And you haven’t had a period in, what, six months? Unfortunately it all seems to add up to you having early onset menopause.”

He went on to tell me about hormone replacement therapy (HRT) and the different types of HRT and how taking it would help ease my symptoms and prevent osteoporosis.

I was sort of tuning out as I didn’t think HRT would be a positive experience for me since I had episodes of paralysis when on the contraceptive pill and on the implant…it’s safe to say extra hormones don’t agree with my body.

Nevertheless, I’d done a bit of research around menopause.

Still optimistic about my options, I asked whether freezing my eggs was possible.

No. It wasn’t, as it was unlikely I had any left.

 

It Happened Before…

I’d been through this before. In my second year of University, I had a no-show of periods for six months.

GP’s questioned me about whether I was pregnant, and never seemed to hear me say ‘no’.

I did endless pregnancy tests to prove that it was something more.

After my GP started speculating around Polycystic Ovary Syndrome, I finally got to see a gynaecologist for an internal scan.

The GP never saw the results from that, and my periods came back, so it was never followed up and that was that.

I felt like everything was going back to normal.

Alongside everything going on in ‘Unit Uterus’, and revisiting what I’ve said about my body and its reaction to hormones, I was recently diagnosed with vanishing white matter in my brain.

This has been a five year long investigation that still is ongoing.

After mentioning everything to with my periods to the consultant who was investigating me and my body’s reaction to hormonal contraception, he seemed to brush it off like it wasn’t related.

So naturally, I brushed it aside too.

Low and behold, after not having periods this time, and waiting months before worrying (having a mum as a nurse never helps), I decided to research a bit more into my vanishing white matter diagnosis.

I found the United Leukodystrophy Foundation website.

Here I was given more information on my diagnosis and some symptoms.

I knew I was on a wide spectrum of the disease, and so took these with a pinch of salt…

…until I found one of them to be ‘Ovarian dysgenesis in female patients: defective development of the ovaries, which can result in lack of menstrual periods, fertility problems, and early menopause’.

WHY WASN’T I LISTENED TO.

Okay, I understand google searches aren’t as good as a doctor, but this was the United Leukodystrophy Foundation.

Leukodystrophy is the fancy medical term related to my condition. The heading of the page was White Matter Disease.

I mentioned the signs of one of the symptoms to the specialist consultant investigating me and they were brushed aside as if I’d told him something boring.

 

What Now?

I’m 23 years old, and I felt, and still feel, like I’ve had my reproductive rights stripped from me.

I’m having to come to terms with the fact that I can’t have a child of my own, before I can even think about even having children.

I feel ashamed that I can’t give my partner ‘our baby’. I worry that if I have a baby with another woman’s egg, that I won’t feel attached to the baby as it won’t be mine.

It disgusts me that I think in this way.

I hate that I feel alone in this and like it’s a battle I’m facing myself.

I always wonder why I wasn’t listened to by the consultant, and whether things could have been different, maybe slowed down earlier.

I feel like I wasn’t supported with options and choices, and signposted to further support when I was told I had early onset menopause.

But I’m upset because there is a lack of literature to support women my age with menopause.

The central discourse around it is for women around the normal age that menopause starts to manifest itself.

There are young women who develop early onset menopause from cancer treatments, women who don’t have children yet, women who have children but are faced with this change of life that are being unsupported and we need support now.

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